Friday, December 28, 2012
Sunday, October 21, 2012
Saturday, April 28, 2012
Monday, April 16, 2012
Not much gets me as fired up and passionate as someone questioning my quality of life. Lately, in the communities I’m a part of, the topic of quality of life for someone with a severe physical disability has come up. Although the issues are separate topics (one blogged about by a family, the other two by nationally televised programs) I found myself feeling frustrated by the beliefs expressed in all three forums.
There is an old saying that goes “ignorance is bliss” but, in my opinion, that couldn’t be further from the truth. Lack of understanding, in my experience, leads to a great deal of misunderstanding. Looking at the child version of myself, you would not have thought anything was wrong with me…you would have thought that I was an average baby girl. My parents learned that I had a potentially fatal disease called Spinal Muscular Atrophy or SMA. In 1988, they weren’t offered much, other than “take her home and love her”. To this day my father says “as if we would have done anything else”. The truth is, my parents did exactly what they were told but also took the diagnosis and its accompanying timeline of a maximum of 2 years and lived. As a child, my parents insured that my life, and that of my younger sister’s who also had SMA, was full of ordinary things. We attended school, went to the beach, family vacations, spent time with friends, had tea parties, and so much more. There were medical things that had to be addressed too. We had daily breathing treatments, physical therapy, speech therapy, doctor appointments, shots and hospital stays. It wasn’t the life that my parents imagined when they found out they were having a baby but it was an awesome childhood. In 1991, my father became an unwitting single parent after my mother was killed in a car accident. He was forced to take on the role of mother, father, doctor, nurse, chauffeur, chef, and so much more. In the next year, we also lost my sister to SMA and we became a family of two. Life changed drastically as we moved and attempted to start over. Despite the hardships, my dedicated caregiver, Brenda, ensured that my childhood was nothing less than extraordinary. SMA limits my ability to do almost everything independently. I have never had the ability to sit, crawl, stand, or walk but that didn’t keep us from doing anything I could think of, from horseback riding to canoeing to flying in an airplane. My world was only limited to my imagination. Despite what passersby’s may have thought when they looked at me, I have lived an extraordinarily happy life and I’m not done yet.
Quality is defined as “The standard of something as measured against other things of a similar kind; the degree of excellence of something”. So I guess that one could say that you don’t know quality until you have something to compare it against. In this instance, no one can judge what quality is to another person. Like it or not, I feel that my life is a quality one worth living. Despite needing to rely on life giving equipment, I enjoy myself and feel that today, at the very least, is worth it. I can’t judge another person’s quality of life because I don’t live it but my inability to accurately predict that there will be quality moments in every day should not allow me to quantify their days. We’re not born with an expiration date that is visible to the world and as such no one knows how long they have. I agree with most people that however many days you have; they should be made the most of. But, that being said, into every life there must fall some unpleasantness. Not many children enjoy car seats, yet any responsible parent makes their children use them because they are to protect them. Similarly, my father chose to protect my life by providing certain equipment that may not have been my favorite. Everyone has the right to decide what is best for their family and child. I don’t have to agree with anyone else’s choices but please don’t force your choices onto me. My life, my choice. I know that life is a terminal experience and that my days are fewer than they were last week but I am determined to enjoy this “terminal illness” because that is the hand God chose to deal me. It can be hard but life would not be worth fighting for if it was easy.
From the outside looking in, you might assume that I have nothing to live for but you would be wrong, dead wrong. Yes, I require a trach and ventilator to breathe. Yes, I have a feeding tube because I can’t eat enough by mouth. Yes, I use a power wheelchair because I can’t walk. Yes, I have been in the hospital longer than I can count. But when I wake up in the morning and look out the window, I’m thrilled that I have the opportunity to live another day to its fullest. I have bad days, like everyone else, but despite what you might think, I also have some amazing days. My quality of life is probably better than some able bodied individuals. I know, at 24 years old, I’ve outlived the doom and gloom prognosis given to my parents by more than ten times. I know that tomorrow is not promised to anyone so, despite what you might see as limitations too large to overcome, I will live this day, and every one after it, to the fullest. My disabilities are made disabling by others ignorance. “Ignorance is bliss”…or is it?
Saturday, February 4, 2012
- Don’t let your SMA define you. It will impact your daily life, yes, but don’t let it be all you are. You are smart, beautiful, talented, and sassy already at age two. I know that you have so much more inside of you that is just yearning to get out. Yes, you HAVE Spinal Muscular Atrophy but you don’t have to BE Spinal Muscular Atrophy.
- Your abilities are far greater than your disabilities. You can do so much more than you cannot do. Sometimes it may seem like your limitations are greater but I know that the challenges you have and will face will make you a stronger person. You will get frustrated by your uniqueness from time to time but remember that we are all talented in different areas. You may not be able to walk but I know that you are so smart. You can teach the world so much. With a bit of imagination and some help from your family and friends, you can master just about any activity. Embrace your differences, for they are what will keep you going!
- Never give up! Your mother and father have given you a fantastic starting point by loving you unconditionally and giving you the best chance to succeed in life, both physically and emotionally. But you know that a lot of this is up to you and your tenacity. You have so many choices to make now and in the future. You can decide, every day, whether or not to be limited by what you can’t do. If you can, be excited by the potential of each and every day. You have so much to show people, don’t give up!
Friday, February 3, 2012
We come into contact with a lot of newly diagnosed families because of B4SMA. It can be a lot of work, emotionally and physically, to help families get the information they need to make the right decisions for their families. First of all, for your own mental health, remember that you can only help people who want to be helped. Offer up your story, what you know to have been helpful for your family. Give them links to websites that you got your helpful information from (FSMA, SCF, GSF, FightSMA, MFMF, etc). Be sure to share support/supply organizations as well (FSMA Care packages, Cole's Quilts, B4SMA, etc.). Mostly, from personal experience, be prepared for the family not to agree with the path you chose for your family. Should they decide, for example, to use palliative care instead of NIV offer to give them contact information to families who have chosen similar paths. Do not push your beliefs but share openly your experiences, both good and bad. It is not always easy to help but if you are prepared for various situations ,you will be fine.